Phoenix Rising tells QMUL: release the PACE trial data
Mark Berry, Acting CEO of Phoenix Rising, presents the Board of Directors’ open letter to Queen Mary University of London (QMUL) urging them to release the PACE trial data, and hopes that other non-UK organisations will join British charities in the same request...
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I was just approved for Rituximab!!!

Discussion in 'Rituximab: News and Research' started by Gingergrrl, Jun 9, 2017.

  1. ukxmrv

    ukxmrv Senior Member

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    So far we have Rituximab and now Cyclophosphamide. We don't know how many other chemo drugs could possibly have a good effect for ME. Cyclo has been used for decades and is considered a conventional chemo drug here in the UK.
     
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  2. Jesse2233

    Jesse2233 Senior Member

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    @Learner1 that Emerging Role of Autoimmunity paper by Maes is fascinating
     
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  3. Jesse2233

    Jesse2233 Senior Member

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    I think we should look at drugs used in other autoimmune conditions and organ transplant as well
    • Cytokine inhibitors (Enbrel, Consentyx, Actemra)
    • Proteasome inhibitors (Velcade)
    • JAK inhibitors (Xeljanz)
    • Other immunosuppressants (Rapamune, CellCept, Imuran, Plaquenil)
     
  4. Gingergrrl

    Gingergrrl Senior Member

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    Wow, am thrilled with all the discussion in this thread! I won't be able to reply in detail for several hours but definitely will later! I get my IVIG & Ritux at an infusion center that is a cancer center but they do other IV therapies like IVIG, blood transfusions, IV hydration/saline, autoimmune/biologics (like for RA), and they get my MCAS docs patients who are getting various IV treatments (and many travel hours to come to this center since the nurses all know about treating MCAS patients). But their main treatment is chemo/cancer patients. I spent close to a year talking to the nurses about Ritux (during all my IVIG infusions) which helped me w/my decision making process.

    And briefly to @Wonkmonk, outside of post IVIG reactions, I have not had a cold, flu, fever, sore throat, or traditional illness of any kind since Jan 2013. I do not have swollen lymph nodes or flu like symptoms whatsoever.

    Edit: And I have been exposed repeatedly when close family members and friends were sick (including sharing food with them) but never once caught anything even when my step daughter or niece had strep throat!
     
  5. LivingwithFibro

    LivingwithFibro Senior Member

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    I've finally had the energy to send you a PM regarding your specialists and the antibodies tests :) please reply when convenient.
     
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  6. Gingergrrl

    Gingergrrl Senior Member

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    I just got to read through all of the new posts in my Ritux thread and combined all my replies below... warning: it is a little long!

    @Wonkmonk I am truly happy to do it and if this thread helps someone else down the line, I cannot tell you what it would mean to me. Someone shared with me today (not on PR) that she got significant benefits from high dose IVIG based on what I shared and I was so happy to hear that.

    I think IVIG and several other treatments have helped people as well? (But I am not sure about the confirmed scientific studies part)?

    When did you first get sick? I got sick in stages with the first hit to my immune system in 2010 (a neurotoxic reaction to Levaquin that resulted in FTS or Fluoroquinolone Toxicity Syndrome) but I was able to recover. The second hit to my immune system was severe Mono from EBV in 2012 but again I was able to recover. The third and final hit to my immune system was an unknown virus in Jan 2013, which I got shortly moving into prior rental which had toxic mold. Two weeks later, I developed POTS and never recovered. I required wheelchair in Oct 2014, and then got MCAS in March 2015, and learned I had all of these auto-antibodies in March 2016. So I put the beginning of this illness at Jan 2013 but the triggers go back several years prior.

    I am so confused re: the role that anti-virals played in my case. I took 1500 mg of Famvir per day for eight months (in 2014) but it never helped me. I then tried Valcyte but could not tolerate it at any dose, even 1/64th of a pill (and highest I ever got was 1/8th of a pill).

    But my EBV and other titers remained IgM+ for many years post-Mono and now they are not. So the anti-virals might have made the EBV less active BUT, did they also push me into auto-immunity & MCAS (or was this b/c of my immune system trying to fight against the mold) or was it totally unrelated? I know mold is a controversial topic to some but I lived it and it was a true nightmare.

    It makes sense to me (but this does not mean much LOL :D)

    This makes sense to me, too, since I had EBV and autoantibodies play a big role in my illness.

    It is a great question and my attempts at anti-virals were in 2014 and early 2015 and I did not have the Rituximab until 2017. I wonder if anyone on PR has done the two treatments together?

    That is awesome and please thank your sister for all of us!

    Thanks, @Learner1 and I bookmarked the paper to read later. I know I say this in many posts but I truly do go back and read the things that I bookmarked even if it sometimes takes me a while to catch up.

    He is an amazing doctor, and I have made the choice for multiple reasons not to publicly post my doctors names or the name of my infusion center but am happy to share via PM or e-mail.

    That would be great! In my case, we felt the IVIG was like a temporary fix and not something I would be able to sustain forever (even though I have been doing it for 14 months) and the Ritux in theory could lead to a remission that IVIG alone could not (for me).

    Likewise.

    @PatJ I am so happy to hear that you have found supplements, and other techniques, that are reducing your light, sound, and odor sensitivities! I know how much you have suffered with those and that made my day :hug:

    I have wondered if the group of us who are no longer capable of getting traditional colds, flues, etc, might be responders to Rituximab but I have nothing to back this up.

    Can you remind me, in regard to POTS, are you able to stand/walk a normal distance without a wheelchair? Does the tachycardia, hypotension, shortness of breath lead to chest pain if you push too far while standing/walking?

    Pavel was the first panel I had done in which I was told that everything would be negative but two auto-antibodies came back positive. I was lucky that this panel was ultimately covered by my insurance (in 2016). I plan to do it again in the future to see where the autoantibodies are now after more than a year of IVIG and the first two Ritux infusions.

    Definitely and Ritux only target the B-cells vs. chemo that pretty much affects the entire body. The nurses at my infusion center refer to it as a "MAB drug" or monoclonal antibody even though it is technically a chemo.

    I promise to reply as soon as I can and hope to be caught up on PM's and e-mails by the end of this week.
     
    Last edited: Sep 12, 2017
  7. Gingergrrl

    Gingergrrl Senior Member

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    I read the article posted by @Learner1 (in post #428) re: IVIG and autoimmunity and wanted to quote a few things from it and had a few comments/questions. Thanks again Learner for posting it!

    From article:

    This was the most interesting piece of the whole article to me and I had NO idea that IVIG for autoimmunity accounts for 70% of total IVIG administered today and surpasses it's usage in immune deficiency!

    Random question but this article (and many others I have read) write the term as "IVIg" (with a lower case second "g") versus "IVIG" and was curious if anyone knows why they do that?

    So this must be the mechanism of how it works (even though I can't say that I fully understand it)! My MCAS doctor said it is "immuno-regulatory" and this is why it put my MCAS into remission. I believe he thinks this will be permanent but I am not 100% certain what happens once I stop.

    @Learner1 There is a table in the article called "IVIG Product Chart" and it says to click on the link to make the table bigger, but nothing happens when I do this, so I cannot make bigger on my computer (and can't access the article at all on my phone).

    Are you able to read this table? I want to see how Gamunex is described and/or ranked (and Gamunex is the brand that my MCAS doctor felt was best for me, and I have never been allergic to it in 14 mos, and am so glad that we chose this one)!

    The article also discusses side effects and the ones that I now get with each IVIG cycle are: severe headache, neck stiffness, chills and either a real fever or “fake” fever, and a feeling of fluid pressure in my head/chest/abdomen.

    The more serious side effects that I am avoiding by doing an extremely super slow infusion speed and a 3-day split dose are aseptic meningitis and pulmonary edema.

    Thanks again for the article!
     
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  8. Wonkmonk

    Wonkmonk Senior Member

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    As I understand the IG stands for "Immunoglobulin" and the abbreviation is usually Ig (e.g., IgE, IgG etc.), probably because it's one word only the *I* is capitalized.
     
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  9. Gingergrrl

    Gingergrrl Senior Member

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    Thank you and I think you are right and mystery solved :ninja:. "Ig" must refer to immunoglobulin in any word and so it is "IV" + "Ig". I see it written all the time as "IVIG" which is how I have been writing it for over a year ,and will most likely continue to write it that way out of habit, but I assume the other way "IVIg" is actually more correct.
     
  10. slysaint

    slysaint Senior Member

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    Sorry to 'but in' but thought it might be of interest;

    Dr Nigel Speight used to prescribe immunoglobulin for children with severe ME, and there were two RCTs done on it;
    "http://www.sjmms.net/article.asp?is...me=1;issue=1;spage=11;epage=13;aulast=Speight"

    "Two RCTs have shown evidence of efficacy for immunoglobulin [6],[7] and surprisingly these have been virtually ignored and no further research performed on this treatment."

    (I know this mostly relates to UK).
     
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  11. PatJ

    PatJ far and free I gaze

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    Before I discovered those supplements I could only read on screen for an 10-60 minutes per day at most, and could only write a paragraph or two because my brainfog was so bad. I spent a couple of years just reading Phoenix Rising because I couldn't think clearly enough to post any messages. The supplements I listed have made quite a difference to my quality of life. The most recent discovery is proteolytic enzymes which allow me to tolerate the light from the computer monitor for longer periods of time before brainfog becomes too severe to continue. Even then I still need to rely on an old monitor, dimmed, with light text on a dark background to reduce the amount of light entering my eyes.
     
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  12. Learner1

    Learner1 Professional Patient

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    See if you can click on it in the original here:

    http://www.the-rheumatologist.org/article/the-mystery-of-ivig/

    There's a similar chart here in the attached, several pages in. (Though I am not exactly happy with some of their recommendations for who would benefit...:bang-head:)

    I have side effects, too, for several days, mostly intense headache and nausea. In addition to further increasing hydration, my doctors have suggested ondansetron, ibuprofen, fexofenadine, boswell, and Quicksilver Colorado Hemp oil for my symptoms.

    I'm having IVIG today and plan to experiment. I was intrigued by what I learned about the boswellia and hope it works. It can reduce brain swelling which leads to the headaches.
     

    Attached Files:

    Last edited by a moderator: Sep 13, 2017
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  13. Learner1

    Learner1 Professional Patient

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    Stresses on cells can cause mutations over time, causing cancers to be initiated. This happens much more frequently than we realize.

    Our immune systems fight cancers in our bodies. Many newer cancer therapies take advantage of this.

    Suppressing the immune system can inadvertently impact this natural cancer-fighting ability. Additionally, it turns off our ability to fight infectious agents we may encounter, which can silently attack our bodies without our noticing until sepsis has set in.

    In the cancer world, I have run into several people who have gotten difficult cancers while on immunosuppressants and the parents of 2 friends became septic, and one died.

    If you listen to the ads for many of these drugs on TV, you will actually hear these risks described. They are very real. They don't happen to everyone, certainly, but taking anything like them should only be done with full understanding of the pros and cons and exploration of alternatives.

    And does suppressing the immune systems with these drugs actually solve the problem? They may reduce autoimmune symptoms temporarily, but one must keep taking them to hold the symptoms at bay. (The manufacturers love this - customers hooked for life...)

    Some of these other approaches, like IVIG and Rituximab offer the possibility of getting rid of the autoimmune problem for good. They're not for everyone and they have their risks, too, but I'd rather be pursuing a cure rather than a bandaid.

    There are no easy answers, to be sure.
     
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  14. Gingergrrl

    Gingergrrl Senior Member

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    Thanks for posting that @slysaint and how frustrating to know that Dr. Nigel Speight found evidence of IVIG being helpful in severe ME but that evidence was virtually ignored and no further research was performed. :mad:

    That is so great to hear and hoping it continues and gets even better :hug:

    Thank you @Learner1 and I was able to read the chart with the new link. I was very curious what was written about Gamunex in the chart and appreciate the info. I think they were only listing recommendations that were not "off-label". I belong to two private IVIG groups on FB and IVIG is being used for just about every condition under the sun with the majority being "off label" yet many are life-changing like it was for me.

    How did it go? And which brand of IVIG did you end up using (only if you are comfortable saying of course)! I have only used Gamunex the whole 14 months so have no idea how any of the other ones might be.

    This is my dream scenario (that the IVIG & Ritux combo get rid of my autoimmune issues and entire illness for good). I still believe this scenario is unrealistic and fantasy on my part but will settle for any percent improvement that they can bring me for the future and still have zero regrets for trying them.

    My IVIG interval is at 5 weeks now (vs. 3 wks) so instead of my next IVIG cycle being next week, it is not until the first week of Oct. It will be interesting to see if I get worse with the longer interval. My first maintenance infusion of Ritux will be approx the first week of Nov. I will type a general update in the next few days in this thread and thanks to all who are still reading :heart::star::hug:
     
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  15. Tammy

    Tammy Senior Member

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    Viruses can mutate over years............perhaps some people may have a more aggressive/stronger strain of virus than others?
     
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  16. Learner1

    Learner1 Professional Patient

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    LOL...:thumbsup:

    In the prescribing document I posted, they were pretty conservative with their recommendations.. I barely qualify according to that, but qualify by every other measure.

    I've come to think of diagnoses as just a bunch of words, we're far more complicated with many things going on, so its not as neat as they make it out to me. I'll take "off label" - I don't need a clinical trial for exactly my condition because no one is exactly like me. But I have read enough to see the benefits and risks and know its something worth trying.

    My corn allergy narrowed the choices considerably. No dextrose for me. I got Gammaked, which I was told is the same as Gammunex.

    I'm still recovering. Tried fexofenadine, ondansetron, boswellia and hemp oil for the side effects. The infusion was fine yesterday. Its been a shaky day today, but I'm hoping the side effects will be better with the additional tools to attack them.
    Lets hope for the best. ;)I think we have a chance.

    Also, I think this is one angle. Paying attention to repairing damage and deficiencies in biochemical processes and the gut microbiome will help us get there, too... After the cell dangers are removed, our cells need to be nurtured.
    Looking forward to your update, oh fearless leader!:thumbsup:
     
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  17. Gingergrrl

    Gingergrrl Senior Member

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    I totally agree with this entire paragraph and so far I have not found another person on the planet with my exact history and symptoms. I also do a lot of research and analyze the risks/benefits before trying anything. I did not do this so well when I first got ill but after the number of disastrous attempts at things in 2013 & 2014, I have learned my lesson well!

    That's right, I forgot about your corn allergy which eliminates Gamunex (and any others?) that require D-5 vs. saline.

    Wishing you a smooth recovery from the IVIG. Is yours done all in one day or a 2 or 3 day split dose?

    If I am the "fearless leader" that is one scary thought LOL :nervous:
     
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  18. Learner1

    Learner1 Professional Patient

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    We don't dilute it, it just goes slow..my naturopath hydrates me with saline on other days.

    I get a lower dose than you do. It's one very long day, but I have a great nurse who comes to my house. I live 5 minutes from the local hospital, so I feel safe enough, and I've spent enough time in infusion rooms so I'm happy I can do this at home and crash in my own bed if I need to.:sleep:
     
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  19. Gingergrrl

    Gingergrrl Senior Member

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    We actually do not dilute mine either and we prime the line with Gamunex right from the start but we use D-5 Dextrose solution at the end to push the final IVIG from the line (which takes about 20-30 min). Many brands you can use saline but for whatever reason, you can't mix Gamunex and saline b/c it can cause it to crystalize in the line. Luckily I am not allergic to corn or dextrose so it works for me. We use the absolute minimum total fluid volume possible b/c I once got pulmonary edema from one liter of saline. It may never happen again but it is always a risk factor for me.

    That is so great to be able to do it at home! Even though my MCAS has been in remission for over one year, b/c I had anaphylaxis in the past, I am still considered a risk for this and am safer at the infusion center. Each day is 7-8 hrs but it has been worth it and I usually sleep through several hours of the infusion b/c the pre-med (Atarax) makes me so sedated. I always have a family member or friend with me so we talk during the day, or I bring things to read, or do things on my phone.
     
  20. Gingergrrl

    Gingergrrl Senior Member

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    I've decided to hold off on updating this thread re: my IVIG & Rituximab treatments until the overall situation has stabilized at PR. I realize that I have disclosed a great deal of medical information, and I do not regret it, and will never be asking for it to be deleted b/c I posted it by choice.

    I have received endless PM's with questions and comments re: how helpful this thread in particular has been. It has also been very helpful for me to get so much support and feedback during this journey. But at present, I am just not confident (for multiple reasons) that what I post here is secure and I no longer feel the same comfort level with posting that I did prior to the current struggles on PR. I am hoping that will change in the future and if it does, I will start updating this thread again.

    But at present, I am finding PR very stressful and not the safe haven that it used to be. So, I have to trust my gut instinct which is to stop this thread and to stop posting further medical info, at least for now.
     

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